Im not sure if this is the right support group for me but I don't know where to get advice from.
I have not had any diagnosis but have gastro issues that have seen me go to a gastroenterologist in England.
I have a b12 deficiency which I self medicate through frequent injections of b12. This has had a dramatic, positive effect on my health.
About 7 months after starting treatmebt for that i had bowel issues that were getting worse. The quality of my stool changed as did the colour and smell and it was difficult to flush.
There were quite a few symptoms between the b12 symptoms and gastro related symptoms.
In october past, on my first visit to the gastroenterologist, I was told to take a variety of tests - 24 hr urine, stool sample, colonoscopy, endoscopy, ct scan and i am currently waiting an mri of small bowel with an appointment mid july.
Low faecal elastase was found and ive been on creon since feb. This also had an immediate impact on the quality of the stool although i wouldnt say it is normal, it is better than it was. Coincidentally, I noticed I needed less frequent B12 injections when I started the creon.
A hiatus hernia was found from the endoscopy as was oesephagitis and gastritis. Modified savary miller was also found.
Urine was fine, CT scan was fine, biopsies were fine.
I was prescribed three months of omeprazole.
I had a second consultation with the gastroenterologist a few weeks ago on the phone.
This did not go as I thought it would so I have come here with some questions -
No diagnosis was made and the pancreas was perfectly fine according to the CT scan. When I asked about the cause of the low faecal elastase, which I presume to be a pancreas issue, he said it is probably because I am HIV+. I asked what I could do to help and he suggested drinking less alcohol or stopping.
I asked my HIV specialist about that and they said there is no connection and also checked my medication and confirmed no connection. They will get in touch with the gastro to confirm this.
I felt like he had given vague, easy answers to my questions to get me off the phone.
I want to know what is causing my issues but i dont think the gastro is interested in that as long as the creon works.
I am puzzled as the pancreas was completely normal and had no swelling.
Is it possible that the enzyme problem is not in the pancreas? I read in the B12 deficiency forum that some medical studies had shown low stomach acidity to cause b12 deficieny and also do not correctly request enzymes from the pancreas when food is eaten.
The mri scan is related to B12 deficiency, not the enzyme issue. The gastro is not connecting these conditions.
Overall I feel left in the dark - he did not go through ANY of the test results with me and his conversation was based entirely on how i was feeling. I had to phone up to get results from various departments or his secretary.
He said he would see me in six months time.
Im not sure what to do or how to go about it - I want a diagnosis. I feel like a sticking plaster has been applied and it won't solve the problem.
Any thoughts or advice would be really appreciated.